Disappearing Rates of Down Syndrome In Iceland

Down syndrome is rapidly disappearing in Iceland due to termination
of pregnancies with Down syndrome fetus

Down syndrome is a chromosomal disorder characterized by
distinctive facial features and some degree of cognitive impairment, but
with normal lifespan.

Rapidly Declining Down Syndrome in Iceland - The Facts
of the Case

Iceland was in the headlines recently when a news
channel ran a segment about the fast disappearing rates of Down syndrome in
Iceland.

Iceland with a population of about
3,50,000 has just one or two
children born with Down syndrome each year on an average, in some
cases after their parents got inaccurate test results. (In contrast, in
the U.S, about 6,000 babies with Down syndrome are born annually according
to the National Down Syndrome Society.)

Since the early 2000's when prenatal screening tests were first
introduced in Iceland, almost 100
percent of women who were found to carry a fetus with Down syndrome underwent
termination of pregnancy.

Doctors in Iceland are required to inform pregnant women
about the availability of a screening test that could demonstrate
(among many other disorders) the presence of Down syndrome in their baby.

Disappearing Rates of Down Syndrome In Iceland

The screening test called Combination test uses an ultrasound
scan, a blood test and the maternal age to determine
whether the fetus will have a chromosome disorder such as Down syndrome.

However,
authorities state that the Icelandic
government does not make it mandatory for pregnant women to undergo the
screening test nor does it force women who test positive to undergo an
abortion.

Approximately 80 to 85 percent of pregnant women opt to takethe prenatal screening test, as per the Landspitali University
Hospital in Reykjavik.

"Babies with Down syndrome are still being born in
Iceland," says Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at
Landspitali University Hospital, where around 70 percent of Icelandic children
are born. "Some of them were low risk in our screening test, so we didn't
find them in our screening."

Interestingly, the hospital where
the pregnancy is terminated seems to acknowledge the operation by giving
the baby's mother a "prayer" card with the baby's sex and weight, along
with the baby's footprints post-termination.

Some of the persons interviewed for the news
piece were not sure it was the
right thing to do to terminate a pregnancy unnecessarily

The birth of any child will usher in
a huge change in the parents' lives; more so when the child has a
disability. The decision to
terminate will largely depend on how the news is delivered to them and
the picture portrayed when counseling prospective parents

"Hammering home the momentous
difficulties that would await us as parents was clearly a tactical move by the
doctor to push us toward an abortion," wrote Mr. Schrad an assistant professor
of political science at Villanova University when he describes what he and his
wife faced when they awaited the results of the screening test.

‘Almost 100 percent of Icelandic women who are prenatally diagnosed to be pregnant with a Down syndrome fetus undergo abortion’

Many people with Down syndrome
reported having a very high level of satisfaction with their lives, and
family members echoed similar sentiments when they said they have become
better persons for having a sibling with Down syndrome.

Geneticist Kari Stefansson had this
to say when queried about Iceland's policy

"It
reflects a relatively heavy-handed genetic counselling and I don't
think that heavy-handed genetic counseling is desirable. You're having impact
on decisions that are not medical, in a way." He added, "I don't
think there's anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals
is a fairly complicated decision."

Says Ingadottir an activist, whose
daughter Augusta now 7 years old has Down syndrome, "I will hope that
she will be fully integrated on her own terms in this society. That's my
dream," Ingadottir said. "Isn't
that the basic needs of life? What kind of society do you want to live
in?"

Helga
Sol Olafsdottir who counsels pregnant women with a Down syndrome fetus says, "We don't look at abortion as a
murder. We look at it as a thing that we ended. We ended a possible life that
may have had a huge complication, preventing suffering for the child and
for the family. And I think that is more right than seeing it as a murder --
that's so black and white. Life isn't black and white. Life is grey."

In conclusion it may be said that to try and upset the balance of nature
through medical science may prove costly and may not be always correct. In fact, many persons with Down syndrome
lead productive lives and have a lifespan of around 60 years.

To end with the words of St. John Paul
II, "A society will be judged on the basis of how it treats its weakest
members, and among the most vulnerable are surely the unborn and the dying."

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